So I have had a terrible “bad back” for years, bad pelvis pain and have been told I have SI joint dysfunction in my pelvis. I feel like my lower back is fusing up, like the tin man in the wizard of Oz. My ankles also feel fused, I have very limited dorsiflexion in my feet/ankles. I’ve seen a physio and have been doing exercises for ages and there’s no improvement. I have major peroneal tendon ankle pain in both ankles. Weird tightness across the top of my buttocks. Also very tight calves. Some pins and needles in my calves and feet but this comes and goes.
i have Ehler Danlos syndrome so any pain gets put down to that. GP couldn’t be any less interested in the fact I’m in agony and really struggling. I honestly think I’m going to be in a wheelchair soon.
so recently I saw on a website you could pay and upload your raw dna file into a website to have your genome/dna mapped. So I did this and one of the boxes of “issues” that it found was that I’m 5x greater risk than a normal person of getting ankylosing spondylitis.
so I googled this and it does sound a lot like it. One of the things I have is that the pain is worse first thing in the morning and then I seem to loosen up and it improves slightly.
i am going to go and see the GP (again) after Xmas, but they usually just fib me off telling me to take painkillers and have physio. I’m really not sure how to get taken seriously. If I tell the gp about the dna gene thing he’s probably going to think I’m bonkers! I’m so fed up of going and whinging about being in pain, I’m beginning to think they think I have some sort of health anxiety (i really don’t think I do) and going and telling them I’ve had my dna mapped kind of backs that up! 🤣. I was there a few months ago with the same pain asking if it might be MS and got sent off with a flea in my ear. I just don’t think this level of pain is normal and am worried it’s more systemic than a bad back.